Julia, the Autistic Muppet

Last week, Sesame Street announced that it is introducing a new Muppet-style character with autism. I love this for many reasons, one of which is because they are making her a girl (named Julia). That’s a deviation from what would be expected, since autism is five times more common in boys than in girls. Creating this character as a girl challenges what people think they know about autism, and about who they think may be autistic among people they meet.

Read the story here: http://autism.sesamestreet.org/storybook-we-are-amazing/
Read the story here: http://autism.sesamestreet.org/storybook-we-are-amazing/

I think many people, upon hearing the news, were under the impression that Julia would be seen on the popular PBS show we know and love. In fact, there are no current plans to put her on TV. She’s only featured in one digital story book, called “We’re Amazing, 1, 2, 3!” If you were under the impression that Elmo was getting a new autistic friend in any recurring way, that’s still unclear. Although I wish we could anticipate more visibility for Julia, she’s still part of a great library of online resources designed to celebrate amazing qualities in all children.

The most intriguing reaction to the news of Julia’s character that I found was an article in the New York Times, which suggests that unbeknownst to us, The Muppets already had an autistic character. If you know The Muppets at all, you definitely know this one. He can’t figure out what his audience will find funny, he often misunderstands metaphors, and even has a verbal tic (wokka wokka wokka). You guessed it… Fozzie Bear. Read the article, and more about the writer’s theory, here.

When I read this column, it made so much sense to me. I’ve known lots of autistic kids that interact with others in a similar way as Fozzie. But the best part of all is that no one ever thought to label Fozzie as autistic. As part of The Muppets, he’s just another lovable character among many, all of whom have their own oddities. Fozzie may fit the diagnostic criteria of autism, but he’s not an autism character, or any kind of stereotype. He’s comedic without being a caricature.

Autism acceptance is not simply passive tolerance. It’s not just about finding ways for kids with autism to learn, play and function alongside their peers. And it’s not just about teaching typically developing kids to understand their peers that have differences. At it’s best, and the goal, is to make it about allowing people with neurological diversity to be just people, and not be defined by what society deems to be a disability.

I celebrate this new character of Julia. But at the same time, I just crave more Fozzie.

Autistic, or Person with Autism?

quotescover-JPG-46I swear to you, this post is not going to be about political correctness. While no one should knowingly be rude to another, I prefer to believe that most of us have the best of intentions at heart in our communications.

On that note, I’d like to discuss whether people who have a diagnosis on the autism spectrum should be called an “autistic person” or a “person with autism”. Most disability advocacy organizations recommend that anyone with a disability should be referred to as a person first, and reference made to the disability second. That’s called “person first” language. There’s a growing contingent within the autism community however, that prefers to be called “autistic person”, or simply “autistic”. That’s called “identity first” language. And it has become a hot button issue for many.

As a writer, I know that even slightly changing the phrasing of words can subtly alter their connotation—even if the words’ literal interpretation means the same thing. And people with differences are so often marginalized in our society, that it’s important to me to refer to them in a way that makes them feel respected. Allow me to explain the difference between person-first language and identity-first language within the autism community:


The Case for Person-First Language

A disability is only part of who a person is, it is not the whole person. Mentioning the disability first is using the disability to define someone, and placing who they are as an individual in a secondary position. A disability is nothing more than a medical diagnosis. You wouldn’t say “cancer person” or “wheelchair person”, you would say “person with cancer”, or “person in a wheelchair”. Mentioning a developmental disability should be handled the same way.


The Case for Identity-First Language

Autism is not something you can separate from the person, it is at the center of who a person is. While there are aspects of it that might be considered disabling, it is not a disease nor a physical limitation. Personality traits are typically used as adjectives, such as calling someone a generous person. Autism may be only one personality trait, but it’s a fundamental one. For example, you wouldn’t say “person with Catholicism” or “person with Americanism”, you would say Catholic or American.


You may notice that both explanations make a persuasive case for using that particular methodology. Both want to emphasize the value and worth of the person. So which is the right one to use? Unfortunately, there’s no clear answer for that. Self-advocates (the appropriate term for people with autism who have reached the developmental ability to speak for themselves) are split, but I personally believe that the majority is in favor of using “autistic”.

For myself, I make a conscious effort to use the terms interchangeably. And when Cheeks is able to understand the difference, assuming he cares one way or the other, I will follow his lead and use whichever he prefers. If you know him, then you know that the best thing to call him is by his name (“Cheeks”, “Ball of Smiles”, and “sheer awesomesauce” are also acceptable terms). And I am hopefully raising him to believe as I do, which is that even if people get their words wrong, they are generally doing so with good intentions.

The Case for Unconventional Therapies

Cheeks' receiving traditional behavioral therapy in social skills and following directions.
Cheeks’ receiving traditional behavioral therapy in social skills and following directions.

There are lots of reasons why parents of autistic children might pursue unconventional therapies. One of them is because the concept of proof—or lack of proof—can be transient, things that are at one time believed to be proven can be disproven (bloodletting, anyone?). For the purposes of this post, I am using the term “unconventional” to mean treatments that are backed with less or inconsistent scientific evidence. Rather, they are supported by smaller studies, anecdotal evidence or personal accounts.

Unconventional treatments for autism range from the innocuous (such as a gluten-free, casein-free diets), to the illegal (such as stem cell treatments which must be delivered outside the United States). Some of the more extreme treatments I have learned about include:

  • Parasitic Worms. Introducing parasites into the intestine on a short-term basis to boost the immune system.
  • Bleach. Diluted bleach ingested orally or via an enema, multiple times a day, to eliminate bacteria, parasites, yeast, or heavy metals in the digestive tract.
  • Lupron. A testosterone-inhibiting drug. Based on the belief that testosterone magnifies the toxic effects of mercury in the bloodstream.

These are just a few examples, there are many more. In the abstract, this list probably seems pretty horrifying and unconscionable. I chose the items on this list specifically because they seem horrifying, most alternative treatments are not this scary. We have not tried these therapies on Cheeks, although we have tried things that are less invasive than those listed above. But would we ever try something more extreme?

Consider this: your child is diagnosed with a life-altering disorder. He or she spends their days in physical discomfort, filled with frustration, and without personal safety. He or she is unable to access things that typically bring joy, such as friendship and education. No one can tell you why this is, and no one can give you a clear treatment plan that will help. Every solution you pursue comes with little or no change, and even when you see progress, it comes in small steps that are painfully slow to arrive. It’s all enormously expensive, and even those treatment options that are mainstream are still not covered by insurance. Everyone in your family is affected on profound levels, whether financially, emotionally, or socially. At the same time, your peer group that is facing similar challenges tell stories of success with treatment plans that your doctor never offered you. You easily find supporting evidence of these stories, even though the studies may be small ones. Can you say with certainty that you wouldn’t act on this information?

quotescover-JPG-15We follow certain rules when choosing new therapies for Cheeks. One is that we must first be as sure as possible that they will not harm him, physically or emotionally. The other is that we only try new things one at a time, so that we can tell which interventions are working and which are not. Furthermore, I believe that any unconventional therapy is best served in conjunction with more thoroughly tested options.

I also don’t believe that every symptom of autism needs to be “fixed”. Cheeks is already perfect the way he is, I am reminded of that every single day. There is greatness inside of him, I know that for sure. I don’t want to alter that as part of shaping him into the kind of person the world expects him to be. I, like any other parent, only want him to be able to live a happy, healthy life.

But seeing your child sad, in pain, or hurting himself daily—these are the things that make parents desperate for help. Desperate people do desperate things. And sometimes, desperation is the motivation needed to make a difference.

Frequently Unasked Questions

Occasionally I get a question about Cheeks that is asked delicately, as if it needs to be approached with extreme care. I understand the impulse, but in my case it’s unnecessary to hesitate. It also occurs to me that questions are like pests. For each one I hear, there are likely many more that I don’t. For that reason, I’m going to use this space to publicly answer those sometimes-tentative questions. I’m calling it my Frequently Unasked Questions (I was tempted to use the acronym as is done with FAQs, but decided against it).

Today’s question: “What is Cheeks’ level of functioning?”

I think this question gets asked because people are seeking an easy way to summarize Cheeks in terms they can understand. However, as is the case with most labels, it doesn’t capture nuances. I usually answer by saying he’s moderately functioning. I do that because it’s like calling someone middle-class, it allows for a lot of unstated interpretation. It’s concise, but it doesn’t really answer anything.

The whole answer is, in some diagnostic criteria he measures on the low end, in others he measures on the high end. In order to answer the question fully I would have to break his individuality down into symptoms, which I won’t do.

A little background on the diagnostic criteria of autism: When Cheeks was diagnosed, it was under the terms of the DSM-IV. That’s a manual published by the American Psychiatric Association which classifies mental health disorders. That publication included a variety of named diagnoses within the autism spectrum, such as Asperger syndrome or PDD-NOS. It was superseded in May 2013 by the DSM-5, which is currently in use. The DSM-5 eliminated the varied labels in the spectrum, referring instead to anyone meeting the diagnostic criteria as simply having autism, and then separating by degrees of severity. That means there isn’t anything called Asperger’s anymore (although many within the community still prefer to identify with the word).

This is relevant information because historically, the term “Asperger’s” was used interchangeably with the term “high functioning autism” (HFA). HFA was never a diagnosis, it was a colloquial term that meant Asperger’s. The main difference between HFA/Asperger’s and other forms of autism was speech skills. It didn’t address any other symptom. Someone with Asperger’s could still have other, more severe symptoms than someone who was described as lower functioning on the spectrum.

quotescover-JPG-97There are several symptoms commonly seen with autism, but not all of them are present in every individual. They may include a lack of understanding of social cues and nonverbal communication, stereotypical behaviors (think obsessive and repetitive), speech impairment, hypo- or hyper-reactivity to sensory stimuli, inflexibility about routines or rules, etc. That’s not all of them, just some examples.

Cheeks does speak, but with significant impairment. He’s very empathetic, but social cues are hit-or-miss. He doesn’t really have repetitive behaviors, but he does develop focused obsessions. His self-injury and tantrums can be severe. He makes great eye contact and he’s affectionate. I could go on, but you see the disparity I’m demonstrating.

I also have to consider the message that labels like low and high functioning send. If I call Cheeks high functioning, I’m disregarding the very real and significant difficulties he has. And if I call him low functioning, I’m disregarding his current and constantly developing skills.

There’s no quick yet descriptive way to label anyone on the autism spectrum. In fact, there’s a growing resistance within the autism community about whether to use labeling terms at all. If you’d like to know more about that, you can read a good explanation here.

What I am most mindful of is that these are real, multi-faceted people, and we’re trying to use one term to describe all of their skills and deficits. That sounds like the results of a Facebook quiz, not a genuine and appreciative way to discuss a person. It’s better just to say to me, “tell me about Cheeks”. I promise not to spend hours on the answer, as much as I’d like to. And in return, I’d love to hear about someone you love, too.

[If you have a question about autism you’d like me to answer here, please use the “Contact Me” link on the top menu.]

The Problem With Play Dates and Parties

downloadWhen my older son was Cheeks’ age, we had plenty of opportunities for him to socialize. That doesn’t happen for kids who have autism. A few months ago I came across a story titled, “The First Time My Son With Autism Got a Birthday Invite I Didn’t Have to Decline“, and I only got as far as the title without feeling that familiar kick in the gut over the ways my son doesn’t get included. By the end of it I was a puddle. Cheeks turns 10 in a few weeks, in those years he has only ever been invited to one birthday party. He’s never had one of his own. There are many heartbreaking stories that I have seen about other families having painful experiences when they have tried, so we’ve just had to take a nontraditional approach to throwing parties.

Until a few days ago, Cheeks had also only ever had one play date. That was with a neighbor’s son, who was asked to come to the house under the supervision of Cheeks’ behavioral therapist, to assist him in learning how to play with new friends. Since it was technically a therapy session for Cheeks, I’m not even sure it counts as a play date.

Cheeks and Music Man, hanging out together. Or rather, alongside one another.
Cheeks and Music Man, hanging out together. Or rather, alongside one another.

A few days ago, we tried the play date thing again. This time, with a boy—whom I will call Music Man—from Cheeks’ classroom. Cheeks was so excited, it’s all he talked about from the moment he got off the school bus until we were ringing the doorbell at Music Man’s house. That’s a Very Big Deal, because talking can be such a chore for him. Music Man’s mother and I were hopeful about it going well, but I think we were both a little anxious as well. On the one hand, I was afraid Cheeks would be triggered in this unfamiliar environment and have one of his epic tantrums, complete with the usual self-injury. On the other hand, if there were any safe place for that to happen, it would be at the home of another special needs family.

The play date was kept short, and both boys seemed contented enough. They tried to do a few things together, but they were struggling with the new experience and not knowing what the expectations were. These humble results were deemed a success by both myself and Music Man’s mom.

It took about ten shots to get both of them almost smiling. I love this picture a whole lot.
It took about ten shots to get both of them almost smiling. I love this picture a whole lot.

If they could tell us, I believe that both Cheeks and Music Man would explain that they want to connect, but they don’t know how to do that. They want to be welcomed by other kids, but they don’t know how to behave when it’s offered. They want to play with their new friends, but they get easily confused by social rules and manners. They want to enjoy the time they spend with others, but anxiety is a part of everything they do. Most of all, they are constantly looking for people and places where these challenges don’t stop them from finding friendship.

If you are lucky enough to have a child with a social life, be grateful. Having friends is one of the great joys of life. And maybe ask your child to invite someone over who sits alone, acts funny, or doesn’t always seem like he or she is listening. That small act might just be the first time another child gets included.

Presume Competence

One of the most common questions I get about Cheeks is “does he understand____?”, and the answer is that I don’t know for sure. In theory he can talk and explain for himself, but in practice, speech is so difficult for him that he has learned to not depend on being understood. Therefore he often remains quiet when people interact with him. But we live in a highly verbal world, especially within the education system. As such, the measurement tools that are used to identify learning are flawed. Of course, that happens with neurotypical kids, too. So… what does he understand?

I attended an educational session this summer in which a newly minted Ph.D. presented the dissertation paper that earned her the degree. Part of her research depended on demonstrating to neurotypical kids how a child can be a competent learner and yet still be unable to comply with the way a test is presented. To do this, she administered an Australian intelligence test to her American students. (I have no idea if this test is authentic, but it demonstrates the point.)

Einstein
It’s likely that Einstein never said this. But the words are relevant anyway.

Why couldn’t they pass the test? It was presented in their native language and they were given whatever accommodations they needed in order to complete it. Because it was created with a particular audience in mind, and they were not that target audience. The same is true of tests created for a verbally-based educational system when given to non-verbal or semi-verbal students.

When Cheeks’ had his most recent intelligence testing done, he tested as having an IQ of around 70. That score is two standard deviations from the mean, which in layperson’s terms used to mean labels like moron, feeble-minded, or retarded. I am not making this up. The standard disclaimer language that I was presented when told of Cheeks’ score included the warning that his score was unlikely to change much in his lifetime. So that was fun.

But I do not believe it. I know there is a whole world locked in there, waiting to be released. I believe in his abilities not just because I’m his mother, but because I see evidence of it every single day. Have you ever had that dream where you are calling to someone who should be able to hear you, but for whatever reason they can’t? I think that is likely the world Cheeks lives within.

Every day, we are chasing down ways to allow him to be heard. Until then I will speak to him as the 9 year old he is, and presume until proven otherwise that he has the ability to understand. There is nothing wrong with his hearing, and I would be crushed to learn later in his life that he didn’t know why we were always talking down to him.

I understand why people talk to Cheeks as if he is a much younger child. And I appreciate their desire to connect with him. But please, don’t interpret his lack of appropriate responses to mean a corresponding lack of understanding.

Welcome

“A loving heart is the beginning of all knowledge” –Thomas Carlyle

Me and Cheeks. It's entirely possible he gets them from me.
Me and Cheeks. It’s entirely possible he gets them from me.

Welcome! On these pages, I plan to document the process of learning, growing and living with autism. My son, whom I will be calling “Cheeks” (learn more about that here), is a healthy and happy 9 year old boy that also happens to have autism. I’ll be talking about the ways that makes our lives different, the challenges we face, and the many joys we experience. I hope that this site will be a source of information in addition to being a journal of his childhood.

From time to time, I may also discuss Cheeks’ brother, dad, or other people in our lives. But I can’t speak for anyone but myself, and that includes Cheeks. We will be taking this journey together, to the degree that he is able and always with his permission. I hope you’ll join us for some of our steps.